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Monica Coenraads’ involvement with Rett Syndrome began the day her then two-year-old daughter was diagnosed with the disorder. A year later, in 1999, she co-founded the Rett Syndrome Research Foundation (RSRF) and held the position of Scientific Director during the eight years of the Foundation’s drive to stimulate scientific interest and research in Rett Syndrome*, culminating in 2007 with the groundbreaking work which demonstrated the first global reversal of symptoms in preclinical models of the disorder. Monica launched the Rett Syndrome Research Trust (RSRT) in late 2008 to pursue the next steps from that milestone.
As RSRT Executive Director, Ms. Coenraads oversees all aspects of the organization, including day-to-day operations, strategic direction, fundraising and communications. With input from her advisors and the scientific community at large, she sets and executes the Trust’s research agenda. Under her leadership at RSRF and RSRT, $41 million has been raised for Rett Syndrome/MECP2 research.
In 2010, Ms. Coenraads co-founded the Rett Syndrome Research Trust UK, now called Reverse Rett, and serves as a trustee. She is an advisor to the Tri-State Rett Syndrome Center at the Children’s Hospital at Montefiore, serves on the Advisory Board of the Simons Foundation Autism Research Initiative and the Advisory Council for The Research Acceleration and Innovation Network of FasterCures, and is a founding trustee of the American Brain Coalition. She was awarded Redbook magazine’s Mothers & Shakers Award, and her efforts were highlighted by the Howard Hughes Medical Institute in the November 2006 issue of the HHMI Bulletin.
Ms. Coenraads was born in Italy and emigrated to the United States in her childhood. She has an MBA with an emphasis in international business but has never received any formal scientific or medical training; she has learned all of the science and medicine relevant to Rett Syndrome completely on her own. She lives in Trumbull, Connecticut with her husband, Pieter, and their three children.
* Rett Syndrome is a rare genetic disorder marked by development reversals – loss of acquired language, hand use and, in most cases, walking. The disorder mostly affects girls and is classified as part of the autism spectrum.